Tuesday, November 12, 2013

At the tender age of three, Addy had her first seizure.We thought she was choking as she lay on the
floor making gurgling noises.After the
EMT’s arrived and we explained what happened they mentioned it might have been
a seizure and we were transferred to the ER.The next few months would be a nightmare.Addy manifested 4 different types of seizures
which included myoclonic, astatic, absence and tonic clonic.Ironically we had just replaced the
carpeting in our home with hardwood floors.Her injuries were numerous as she repeatedly fell on those floors and
seized.It’s hard to see your child
covered in bruises, lacerations and with permanent teeth knocked loose.It became necessary to strap her into her
chair during meals and accompany her to the toilet or when using the
stairs.There is no known cause for her
disorder and we were told she may outgrow it, however she continues to decline.Her doctor has diagnosed her with a
combination of two different syndromes which are Doose and Lennox Gastaut.They are both difficult to control and we are
constantly changing medications and treatments to try and stop her seizures.Currently Addy is on three different
medications.Her daytime seizures are
controlled for now but we have never had control of her nocturnal seizures.The side effects of these medications have
caused developmental delays and learning disabilities as well as behavioral
problems.A secondary diagnosis of
Sensory Processing Disorder has also recently popped up.We have tried all kinds of alternative
treatment including chiropractic, homeopathic, acupressure, hypnotherapy,
occupational therapy and brain-linking.Our next course of action will probably be the Ketogenic diet.

Through it all Addy constantly has
a smile on her face which is a reminder to me of how valiant her spirit
is.She is now seven years old and in the
second grade.She attends a tumbling and
clogging class every week and has a special connection with animals.We are in the process of applying for a
companion/seizure dog for her.The
hardest thing for me as her mother is to continually watch my daughter slip
away.I will never give up hope and I
will try every thing in my power to have her be a normal kid again and come
back to me.

Tuesday, November 5, 2013

This Wednesday, November 6th, 2013, all Utah locations of Chili's Grill & Bar are supporting the Epilepsy Association of Utah (EAU) through a "Give Back Night." So, on Wednesday, let your local Chili's do the cooking and support the EAU at the same time!

As if their Spinich & Artichoke appetizer wasn't enough incentive to head in to Chili's and enjoy a meal, Chili's is showing their support by donating to the EAU! With each flyer (see below) presented on Wednesday, 11/06/2013, Chili's will donate 15% of the event day sales back to the EAU.

Join the official Facebook event and, when you are at dinner, snap some pics and tag Epilepsy Utah in your photo so we can add your experience to our Facebook album. Your photo might even be featured in the next Wavelength newsletter!

We look forward to seeing you at Chili's!!!

~*~

Please print a flyer and take it in to your nearest Chili's location in order to have 15% of the check donated in support of the Epilepsy Association of Utah.

If you have any questions or concerns, please email holly@epilepsyut.org or call/text (801) 566-5949.

NOTICE:

While the flyer states that the event is only happening in Layton, UT., the EAU has confirmation from the event planner that this flyer does apply to ALL Chili's Grill & Bar locations, and each location is aware that the Give Back Night is happening only on Wednesday, November 6th, 2013.

The "Give Back" event flyer is required with each check to receive credit for the sale. Sale cannot be included in donation amount without flyer.

Offer is only valid on the date stated above. Donations will not be given on sales made prior to or past this date.

Tuesday, October 1, 2013

SALT LAKE CITY, Tuesday, October 1, 2013- On August 31, 2010, seven-year-old Lyndsay Lynch had her last seizure.It was that seizure that cost the vivacious and bright-eyed Lyndsay her life.

“That year, and every year since, her family, friends, neighbors and even strangers, have walked around the track at Weber State University to keep her memory alive’, said Annette Maughan, President of the Epilepsy Association of Utah, “ And each year, the EAU is there to pay tribute to Lyndsay and her family. Their loss and their dedication is felt deeply at the EAU and we can not thank them enough for all that they do.”

All proceeds from the walk are used to send children with epilepsy to The Association’s Camp Neuro Revolution. This year is especially bitter sweet since Lyndsay would have turned 10 and been eligible to attend camp for the very first time.

The camp is geared for pre-teens and teens, ages 10 -18 with epilepsy.

Held at the National Ability Center in Park City, the Lynches generous donation in Lyndsay’s name last year enabled almost 25 children to participate in what they never thought possible: Summer Camp!

Founded in 1973, The Epilepsy Association of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life for all individuals living with Epilepsy and seizure disorders. 1 in 26 people will develop Epilepsy at some time in their lives leading to over 100,000 people in Utah alone. Epilepsy is the 4th most common neurological disorder in the US after migraine, stroke and Alzheimer’s. The Epilepsy Association of Utah offers a public education program, statewide support groups, personal and professional advocacy, college scholarships, art exhibits, educational conferences, summer camp and more.Visit http://epilepsyut.org for additional information.

Monday, August 26, 2013

SALT LAKE CITY, Monday, August 26, 2013 - The
Epilepsy Association of Utah (EAU) recognizes the potent nature and reputation
cannabis has gained in recent news.While
the EAU does not condone the abuse of marijuana or recreational use of marijuana,
we note the medical value and potential the extraction of Cannabidiol (CBD)
from the plant has for the epilepsy community.

“This isn’t a political
issue and it isn’t an ethical issue; this is a medical and public policy
issue,” says Jennifer May, EAU Professional Advisory Board Member.She continued, “I never imagined I’d be
advocating for high-CBD cannabis, but watching my son seize every day has
forced me to become educated and realize the potential this plant extract has
for changing lives.”

The EAU believes there is
great benefit in the support of any legislative measures allowing the expansion
of treatment options, specifically any medical grade product derived from the
cannabis plant.

ABOUT THE EPILEPSY ASSOCIATION OF
UTAH

Founded in 1973, The Epilepsy Association
of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life for
all individuals living with Epilepsy and seizure disorders. 1 in 26 people will
develop Epilepsy at some time in their lives leading to over 100,000 people in
Utah alone. Epilepsy is the 4th most common neurological disorder in
the US after migraine, stroke and Alzheimer’s. The Epilepsy Association of Utah
offers a public education program, statewide support groups, personal and
professional advocacy, college scholarships, art exhibits, educational
conferences, summer camp and more.Visit
http://epilepsyut.org for additional information.

Saturday, August 24, 2013

SALT LAKE CITY, Saturday August 24th, 2013 - The EAU's Community Service Awards are
the annual opportunity to recognize, encourage and promote those people and
entities that make or have made an impact in the epilepsy community within
Utah.

This year marks another achievement: our 40th Anniversary! And
that’s something to party about!

“We are so excited to celebrate how far
the EAU has come since its inception,” says Holly Ferrin, Executive
Director. “It’s gratifying to
recognize those who have helped our organization enhance the quality of life
for all individuals living with epilepsy and seizure disorders. This will excite and revitalize the
energies put forth with volunteer efforts for future endeavors with the
Epilepsy Association of Utah.”

So brush up on your 'Crocodile Rock' and wear your best 1973
leisure suit because we are going retro! Anyone for some Fondue?

September 20th, 2013

Infinity Event Center

26 E 600 S

Salt Lake City, UT.84111

6:00pm - 7:00pm Cocktail hour

7:00pm - 10:00pm Dinner and Awards

Nominations will close September 3rd, at which time voting will
commence. Nominees will be notified prior to then beginning of voting. Voting
will be open until September 10th and awards will be handed out during the
Dinner on September 20th.

Categories

Medical Professional

Volunteer Group

Volunteer

Youth Volunteer

Advocate

Youth Advocate

Commercial Partner

Registration to attend the celebration of our 40th year and Community Service Awards is now open! The registration types are as follows:EAU Member: $30.00 Non Member: $40.008-Person Table: $325.00Corporate (up to 16): $600.00

ABOUT THE EPILEPSY ASSOCIATION OF UTAH

Founded
in 1973, The Epilepsy Association of Utah is a 501(c)(3) charity dedicated to
enhancing the quality of life for all individuals living with Epilepsy and
seizure disorders. 1 in 26 people will develop Epilepsy at some time in their
lives leading to over 100,000 people in Utah alone. Epilepsy is the 4th
most common neurological disorder in the US after migraine, stroke and
Alzheimer’s. The Epilepsy Association of Utah offers a public education
program, statewide support groups, personal and professional advocacy, college
scholarships, art exhibits, educational conferences, summer camp and more. Visit http://epilepsyut.org
for additional information.

Saturday, August 10, 2013

SALT LAKE CITY, Saturday, August
10, 2013 - The Epilepsy Association of Utah and Mom Extraordinaire, Holly
Richardson, are pleased to present: Advocating for your Student with Special
Needs on August 17, 2013 at the American Fork Gardner Community Room.

School
is just around the corner. Could you use some tips from other moms "in the
trenches"? Do you sometimes wonder if your conversations about your
child's needs are about as effective as talking to a brick wall? Come learn
some effective advocacy techniques from an experienced mom who has been
parenting special needs children for over 25 years.

“This
time of year is always extremely stressful for parents of children with special
needs, preparing for school, and for a parent whose child has epilepsy, it gets
a little bit more intense. Most schools are simply not set up to inherently
assist with a child who has seizures.” Says Annette Maughan, President of the
Association, “ To help the parent navigate the system, the EAU is offering ‘Advocating
for Your Student with Special Needs.”

Holly Richardson, mom
to 24 children, former Representative in the Utah House and mostly retired
midwife, is excited to come to talk to us about being an effective advocate for
our children's need. No one knows their needs better than we do - how do we get
the entire team on board? Let's talk about it!

When: August 17, 2013

10:00am – 1:00pm

Where: American
Fork Gardner Community Room

64 South
100 East American Fork, UT

A light lunch will be
served.

ABOUT THE EPILEPSY ASSOCIATION OF UTAH

Founded
in 1973, The Epilepsy Association of Utah is a 501(c)(3) charity dedicated to
enhancing the quality of life for all individuals living with Epilepsy and
seizure disorders. 1 in 26 people will develop Epilepsy at some time in their
lives leading to over 100,000 people in Utah alone. Epilepsy is the 4th
most common neurological disorder in the US after migraine, stroke and
Alzheimer’s. The Epilepsy Association of Utah offers a public education
program, statewide support groups, personal and professional advocacy, college
scholarships, art exhibits, educational conferences, summer camp and more.Visit http://epilepsyut.org
for additional information.